I excel at being behind in posting. My last post was a total rant against RMH… and probably not polite to share.
After giving us a ton of grief about not having a room if we went home, Ronald McDonald had a room for us. I was so glad to get out of here last week, which is really a bummer because I really like the staff at Hershey Medical Center. Too bad teleportation doesn’t exist. We could pop in for treatment and be home for dinner. Same with going to CHKD.
We arrived at clinic yesterday morning. The research nurse was really nice to spend the day with us considering she probably had a ton of stuff to do. And the doctor who is heading the study at Hershey was really nice to check in on us from her conference in California. I am amazed at how on top of things they are here. They have communicated with CHKD about Jesse’s treatment. And they are trying to work with us to get us home. The only sad draw back is lack of a teleportation unit. 🙂 If you every have the chance to come to this hospital, I would recommend it.
Jesse received her first dose of the chemos the DNA testing statistically showed would be most effect towards her tumor aout 1pm. Two of the drugs are IV infusions taking place on Day 1 and Day 14 of her treatment. They are gemcitabine and oxaliplatin. The gemcitabine runs over 30 minutes. Oxaliplatin takes 2 hours to infuse. Both are going to throw her counts in the toilet, meaning that I am making her wear a mask. Plus she might (more than likely) will loose her hair.
Another crazy side effect of the chemos is a tingling sensation in her peripheral nerves. This become more pronounced with exposure to cold. In fact, we were asked not to let her have cold drinks before or during chemo because you have these types of nerves in your neck. Other patients have been observed to have a sensation of not being able to breathe after drinking something cold while getting oxaliplatin.
And of course, nausea is an ever present side effect that hit pretty hard until I talked her into having some ativan. But we have to try this because the PET Scan taken on December 3rd shows a slight increase in size of the active tumor near her right hip since the scan done in late October.
The other drugs she is taking are sorafenib and turmeric. Both are taken twice a day, every day of the 28 day cycle. I am not seeing a great deal of trouble for Jesse with these 2 as quickly as I saw her get sick from the IV chemos.
She is complaining today that her right side near the tumor hurts, different spots on her legs hurt, and at one point her back hurt. But she has been drinking on her own and did eat a little this morning. I think she would have eaten more if the smell of what was being cooked in the kitchen hadn’t turned her stomach.
That is the hard part with staying at RMH. One not sure who is here with what and where they have been, and what they plan to cook for dinner and how the smell will affect Jesse. And we are not allowed to eat in our room because of potential for bugs/ past messy people. I overheard some ladies complaining the in kitchen about having to bake here. The comments were it would make since to bake at home where they could do laundry at the same time. These people are volunteers. I beat a retreat out of the room before I excelled at my favorite past time of open mouth insert foot.
Our next appointment is December 15 for her counts to be checked. We have been asked to stay nearby in case Jesse has an emergency. While there has been a study of gemcitabine and oxaliplatin on kids at St Jude, I have been told this is the first time these 4 have been used.
If everything goes well, we will be able to maybe do the infusions here and then return home with count checks at CHKD.
Disclaimer: While we hope this combination will stop the tumor and free us from having to be away from home for long periods of time, this is experimental. And the turmeric being used isn’t stuff you would buy in a health food store because those manufacturers aren’t FDA regulated. Luckily they have a Naturalistic doctor they can consult with.